I have Churg Strauss syndrome and my feet, which seemed to be dead, are now regenerating, I think. I want to ask what the position is with long haul flights and vasculitus - my brother, who lives in Perth, Australia, is dying, so very anxious to get there. Many thanks, Sandra
Long haul flights: I have Churg Strauss... - Vasculitis UK
Long haul flights
Dear RareStap,
First of all I'm sorry to hear about your brother- I'm sure I can safely say we all send him our love and best wishes. Unfortunately, in answer to your actual question- I haven't a clue, sorry. John may know, you can contact him through the 'Vasculitis UK' website (johnmills@vasculitis.uk- or something very similar) or, maybe the best option for you, post a question here marked for his attention.
Sorry that I can't be of any more help, our prayer are with you both.
AndrewT
Different condition, but my husband has cerebral vasculitis and is on prednisolone and azathiorpine. He has flown twice this year to Europe and each time has bloods checked before leaving. I should think longer than two weeks you would have to have these done overseas!
We also saw Dr Luqumani at the JR Oxford this week. We asked about the possibility of my husband going to India next February as I am cycling a charity cycle ride out there , partly for Vasculitis, and he said it shouldn't be a problem providing he doesn't have live injections. He also mentioned that he would inform his colleagues in Deli that we were coming in case anything happened. Maybe this is something your Dr could do in Australia?
So sorry to hear of your sad news, good luck.
I feel for you with the dilemma , unfortunately I cannot add to your question other than in sept last year a CSS patient travelled from London to New Zealand Via plane and other from England was driving along the great southern road aust .they were saying no problem also travel insurance allows it I am still uncertain as I am wanting to fly to Corsica sept next year from aust for
4 weeks but I need to long haul and have the blood tests every 2 weeks for cytotoxix and prednsone to see that the liver function etc are in order , so I would have to have a blood test on Corsica and checked for being satisfactory .
In your situation I do not believe you will have a problem there is a lot of skilled proffessors to handle any issue and insurance will cover you .
I hope someone can answer my question
I have had mpa along with severe nerve damage in my feet for about four years now.
During this time I have been on a number of long haul flights although not as far as Austrailia.mostly to west Coast USA and Far East.
My Prof has always said don't worry about it but make sure you walk around a lot.Also try to prebook an exit seat as you can stretch out and it helps those cramps.its worth the bit extra in economy and gives more space than Premium.
Because of the chronic fatigue most people with Vasculitis endure It is good to break the trip up into shorter legs if you can.For example Stop in Singapore or Dubai (or both) for a few days.Also try to book on an A 380 aircraft. For some reason(someone told me it is to do with cabin air pressure) that aircraft is less tiring than others on long haul.And there is more walk about room.
Hope this helps